Prednisone taper question

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hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 7/8/2008 8:34 AM (GMT -7)   
I have very slowly and successfully been tapering my prednisone with a goal of getting down to 5mg and then possibly lower.  I started at 10mg and stayed there until I felt pretty good then altnated every other day between 10mg and 7.5mg for 4-6 weeks and then was at 7.5mg for 4-6 weeks and now I am at the point where I am alternating every other day between 7.5mg and 5mg. 
 
I probably didn't start this current taper at a great time.  I had my sister in law's 2 kids for a week and was also trying to recover from a bad reaction to the sun.  My SIL's kids are close in age to my kids, but they are not as self-sufficient as my kids are and I got really worn out entertaining them and taking care of them.  I completely crashed the day after they left and couldn't get out of bed at all - that hasn't happened for a long time.  I'm up and around again, but just feeling kind of crummy.
 
Anyway, I know sometimes people can feel kind of crummy when they get down to around 5mg, but if they wait it out, their bodies adjust to it.  I'm just wondering how long people think I should wait out feeling kind of crummy.  I'm half tempted to go back to 7.5mg everyday until I feel better again and then re-try the taper, but I really really want to get to a lower dose.  So far, I've never been able to get to 5mg, but I want to really badly.  I think it would make losing weight a little easier.


Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Lynnwood
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Date Joined May 2005
Total Posts : 7019
   Posted 7/8/2008 9:07 AM (GMT -7)   
I think it's better to go back up for a while until you have at least 3 weeks of feeling decent. Then, if your doctor agrees, try again with the alternating dose. Or there are 1 mg tablets available - it might be better to do 6 mg for a while?

Just my thoughts...

I'm pretty sure 7 mg is about what the adrenals put out normally, so some people can't get below 7 -- I started not feeling too great when I got to 7 -- back at 9 now as some other things came up.

Cheers,

Lynnwood, Co-Moderator: Lupus Forum
SLE(’00), Sjogren's Syndrome, Raynaud's Syndrome, SAD, Depression, Herpes Simplex 1
Piroxicam, Plaquenil, Prednisone(was 15mg, now 8mg), Cellcept, Xanax, Trazodone, Boniva(3mth shot), Wellbrutrin SR, Valtrex
Links: DIAGNOSING LUPUS (4 of 11), LUPUS INFORMATION, LUPUS RESOURCES, Donate to HealingWell, Drug Interactions


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 7/8/2008 11:29 AM (GMT -7)   
Wow Hippi . . . this really IS a hard time to be tapering.

Ginny has said that she has to stay on a low dose too. I wonder if there is any down side to such a low dose if it is keeping you on your feet??? A pharmacist could probably tell you the potentional side affects at that low dose.

Let us know what you decide.

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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sjkly
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Date Joined Dec 2007
Total Posts : 2113
   Posted 7/8/2008 2:40 PM (GMT -7)   
Its up to you and your doctor obviously but I don't tolerate feeling crummy and there is nothing magical about 5 mgs to me. If I felt crummy on 5 I would take more until I did not feel so bad then try again but I am well known as a whimp.
Good luck with what ever you decide to do and I hope you feel better soon.
Sj

Bsime
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Date Joined Apr 2006
Total Posts : 1299
   Posted 7/8/2008 3:02 PM (GMT -7)   

Hippie,

The lower you go the slower you go.  Once under 10mg it can be difficult for some people.  I would not kick it up on your own as that is defeating the taper and adjustment your adrenals have to make.  Some people make it smoothly, some don't and some need a maintenance dose indefinitely.

Adrenals produce 7-10mg of cortisol (same as prednisone) naturally and when you take large doses of pred the adrenals shut down their production.  Tapering problems can occur at much higher doses but are common below 10 or 15mg.  Sometimes adrenal glands can atrophy and will not kick in.

At any rate you should go very, very slowly under the direction of your doctor.  Taking prednisone is not like taking aspirin....  Flipping back and forth might make you feel better temporarily but it might be making it harder to eventually taper.  You are "flipping your adrenal switch" on and off like a light switch when you do that and that is not good for your body.

My doctors were taking a minimum of 2 months for each 1 mg of taper below 10mg and I had no problems.  The only problems I had were reducing from much higher doses but those reactions only lasted a few days.  They stopped at 5mg due to a reaction from imuran and did not want to taper prednisone for another year.  Hopefully next year. 

Hope you can eventually get off pred but don't be in a rush. 

Bill


Mixed connective tissue disease (systemic lupus, scleroderma, polymyositis), Raynauds phenomena, Hypertension, Barrett's esophagus.
 
Meds: prednisone 5mg, 50mg imuran, Lotrel 40/5mg, maxide 37.5/25mg, folic acid, potassium, aciphex 20mg, multi vitamins.
 
Maintain your optimism and you can beat the odds.
 
"Although the world is full of suffering, it is also full of the overcoming of it."  Helen Keller
 
 


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 7/8/2008 3:36 PM (GMT -7)   
HI Hippi,
 
From my experience, and this is just my body, when I'm down around 5mg, it just isn't quite enough to keep me out of a flare. The reason is that my adrenal glands are mildly insufficient on their own.  Yours might be too.  Most of us lupins are which is why prendisone is so often prescribed.  We have malfunctioning adrenal glands. We need a synthetic top up!!
 
At this low dose, how about you try just a 1mg increase? To go from 5 to 6mg is a big jump.  It is almost the equivalent of going from 15 - 20mg.  Percentage wise.... You might feel totally different and not have to do such a large jump up.  Just a thought!  I know that I respond hugely to a jump from 8.5 - 10mg. I'm a completely different person. 
 
You might find that you need to stay on a dose over 5mg from now on.  Especially if your adrenals are insufficient. You can get a blood test done to find out.  It's called a "morning cortisol test".  You have to get your blood drawn between 8-10am, when your cortisol levels are at their lowest. 
 
I know the whole prednisone taper thing is a pain in the butt sometimes.  I think it's a victory for me if I can get to 7mg!!  I'm at 10 right now.  We'll see!  Good luck!
 
Ginny
 
I just read Lynnwood's post.  She's dead on!!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 7/8/2008 4:44 PM (GMT -7)   
I'm not sure what to do. I'm following the tapering advice of my doctor, but he has told me only to try tapering when I'm feeling good for an extended time period (like what Lynnwood was saying). I see my doctor again in August, so I might just stay at 7.5mg until I see him. Maybe it would be best to not try to taper until the fall anyway when the kids go back to school and I am not quite as busy. We also go on vacation next month and as fun as it is, it also zaps a lot of my energy. I've noticed that my mood has gone downhill a little bit too with feeling crummy. I like how I feel on 7.5mg of pred, I just hate struggling with weight.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

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MJLD
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Date Joined Jul 2007
Total Posts : 1048
   Posted 7/8/2008 9:12 PM (GMT -7)   
Hippi,
I know exactly how you feel. I usually get really moody trying to taper off of the prednisone and feel so tired. It probably is a good idea to stay where you are for a while! I'm so sorry you are struggling. I'm glad you guys can't see me! I am HUGE! You will be in my thoughts and prayers. Judy

TiBoBi
Regular Member


Date Joined Mar 2008
Total Posts : 89
   Posted 7/9/2008 2:16 PM (GMT -7)   
How long have you been on the Plaq? I am off pred now and was really lousy for awhile but then all of a sudden.. like after a month being totally off.. I started to feel pretty good. I think my plaq kicked in right about then as I have been on Plaq for about 8 months now. I know it can take time for the plaq to kick in.

I still have flares if I do too much or go out in the sun, but overall, on a normal day I feel "almost" normal. I hope you feel better soon.

sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 7/9/2008 2:34 PM (GMT -7)   
My rhuemy's first question to me at every appointment is "How much Prednisone are you on?" Although at each appointment we will set a target for the next six weeks she does not expect me to follow the schedual exactly or to always meet the target for reduction (she might like it if I did but she doesn't EXPECT it). My last appointment I shocked her by answering none.
Sj

hippimom2
Veteran Member


Date Joined Jul 2005
Total Posts : 5403
   Posted 7/9/2008 5:09 PM (GMT -7)   
Ti, I've been on plaquenil for a long time now - 3 years I think. Sj, your rheumy and mine sound the same. He knows I'm always trying to get to a lower dose, but completely understands when I'm not quite where we want me to be. Judy, it wasn't until I saw your post that I put my crummy mood together with trying to taper my prednisone. That's why having you guys is so great. Sometimes the answer is hitting me in the face, but I can't see it.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

Clickable:  LUPUS INFORMATION & LUPUS RESOURCES.

Please allow HealingWell to continue helping others by donating: http://www.healingwell.com/donate/

 

Co-Moderator: Lupus and CFS Forums



Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 7/9/2008 5:49 PM (GMT -7)   
Greetings, hippi! I , too, have had a hard time tapering off my pred. I also would like to go off of it completely to help me with some weight loss! Lynnwood is correct, however, you need to have about three weeks of feeling good before you try to taper down. Fall sounds like a good target for tapering down, too. Currently, I am taking 7 mg one day and, then, 6 mg the next, and alternating. If I go to 5 mg, I feel bad. I have joint pain and increased inflammation. It is so annoying.

Ginny, my rheumy would like me to go off the prednisone, too, because the long-term effects, even on such a low dose, are not good. My rheumy says prolonged use can cause thinning of the skin, thinning of the bones or osteoporosis, dry mouth and dry eyes, vision problems, increase in sugar levels (diabetes), easy bruising, dental problems from the dry mouth, and a host of other issues. And, then, there is the weight gain issue.

Good luck, hippi, on your taper! I will keep you in my prayers.

Audrey
Prayers,
Audrey Ann
 
Lupus and RA and LOTS of Medications!
 


 


cured4real?
Veteran Member


Date Joined Dec 2005
Total Posts : 1944
   Posted 7/10/2008 8:59 PM (GMT -7)   
Hi hippi, sorry to hear you are feeling crummy. I had a hard time with a 10mg long taper, but can taper from 20mg down to nothing with a thirty pill taper for some reason. I guess because though it is a stronger taper, it's a shorter one. I didn't like the long taper and ended up even after I toughed it down to nothing feeling so bad that I had to back up on the old 20mg short taper, which helped, but didn't work as well after the long one, but I managed to get off after that one. After things were better. when I took the 20mg shorter taper, it worked as good as usual.

I think it may take a while for your adrenals to atrophy, I have had secondary adrenal insufficiency for many years (I don't produce enough ACTH) and my adrenals work well per my last cortrosyn stim. You might ask for the stim test if you feel you have a problem. Maybe something else is going on that a different type of steroid might help.

I hope you feel better soon and wish you the very best.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

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